Category: cauda equina syndrome

what I forgot to mention

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders

What I forgot to mention

If you are a frequent reader of my blog, I am sorry for the repetition. I had four back surgeries, total. The first 2 were done in 2001 and 3 and 4 were done in 2006 for the same reason. Cauda Equina Syndrome. Because of this syndrome, my new PCP thinks I have chronic back pain. I sort of do but it’s not an every day type of pain. It’s more that my ankle and foot are the culprit that is causing me disability than my back. And despite telling him this, he is hooked that my ankle/foot pain is stemming from my back, which frustrates the hell out of me because umpteen doctors have proven that it’s my ankle not my back that is the problem.

The PCP’s nurse called me today and asked how my back and ankle were doing. I wanted to hang up on her. I told her it was my ankle and not my back that was the problem. I had to explain to her that I have complex regional pain syndrome in my ankle/foot/toes. And that it was wrecking havoc with my sleep. I keep waking up in the middle of the night in pain. She called me back later this evening to tell me my PCP is thinking about prescribing me xylocaine gel to put on my ankle but hasn’t fully decided on it yet. I should know in a day or two. So I got out my over the counter Aspercreme Lidocaine gel and put that on because my ankle was hurting. Surprisingly, the pain went down 50% in a short amount of time. I don’t know if the strong pain pill that I took also worked at the same time I applied the gel, but whatever. I wasn’t in excruciating pain.

Then at dinner time, my mother was in a “happy” mood. I told her what I did today, about my writing and she said “why don’t I write about happy stuff”. I wanted to say to her because I am not a happy person but I didn’t want an argument. We had this discussion before and it didn’t go well. I felt really depressed after this conversation. Nothing I do pleases my mother. I just want to die. Maybe that will please her.

The damn birds have finally stopped chirping, least for now. I want to hunt them down and wake them up if they are sleeping like they have kept me up all damn day. I hate those fuckers.

I only put the lidocaine stuff on my ankle. So naturally, my foot is throbbing. I just took more pain meds. I might take another strong pain pill in a little while. While I was talking to my PCP’s nurse, I explained to her how I take the Neurontin and the strong pain pill. She wanted to increase the dose of the Neurontin. I explained to her how I take it and she asked if I took it every night. I do for the most part, even though I gain serious weight from it. Once the burning stops, I stop taking it though. I didn’t tell her that.

Painful emotional Monday

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders

Painful emotional Monday

I woke up before my alarm and felt sick. My stomach was bothering me and I just didn’t have the motivation to shower or brush my teeth. I went to the bathroom and almost vomited. Was not going to brush my teeth then! I knew if I did, I would only puke some more. I went upstairs and set my alarm for another hour and tried to sleep. My mother got up and all hopes for sleeping went out the window. The TV was loud and then she played her dice game. I took some stomach medicine and shut my alarm off. I really wanted to cancel my psych appointment but I told my lab friends I would be by to clean out my locker.

I managed about an hours sleep and then had to run for the bus. The homeless man that is in my neighborhood started talking to me and this lady that sat next to me on the bench. I wasn’t paying attention to the bus and we almost missed it. I would have cursed him if the bus went by. My stomach was still not doing well but I had my espresso with soy milk anyways. I made it to my appointment with ten minutes to spare.

I told my doc about what went on this weekend with Amy Bleuel. She had seen the tattoos but didn’t know what they meant. I explained what they were about and that she died by suicide. I also said that I think the same fate is for me, even though I wasn’t suicidal at this time. It was tough to talk about my feeling about this with her but she didn’t judge me or freak out so it felt good to share my thoughts on the matter. She is trying to find a therapist for me and will be in touch when some names are given to her. No one at the hospital she is at does therapy. For the number one hospital in psychiatry in the country, I find this hard to believe. Apparently, they just do meds. Very unusual.

I left to go to the lab to see my former co-workers. It was sad being there. Some people I haven’t seen in a while and others I have seen whenever I visit. I found out a friend just had surgery so I will be calling her later today. I hope she picks up. I emptied my locker. It was junk, most of it. I found a video I had totally forgotten about, The Importance of Being Ernest. It’s one of my favorite movies. A few books were there. I thought one of them was a book on baseball cards but it was on stamps. I tossed it in my recycle bin when I came home. It was almost 20 years old so it was out of date.

I stood the whole time I was in the lab. My ankle and foot did not like that at all. I was getting thirsty just talking the whole time, too. I had to get something to drink so I went to CVS and got a vitamin water. I would have bought just water but they didn’t have a small size just big bottles. I didn’t want a big one. I was hurting all the way home. I am glad I came home when I did because I had gas really bad. I trusted a fart and that was it, I shit my pants. I still had my jeans on so I am glad I wasn’t sitting on my bed. I went downstairs and had my mother help me undress. She was shocked I shit myself. I didn’t even feel it until it was too late. Something just didn’t agree with my stomach. I have been crapping water the past hour so I will be drinking powerade so I don’t get dehydrated. I took some Imodium. I haven’t eaten anything all day except for the espresso. I didn’t have time for a sandwich so I don’t know why my stomach is against me. I feel so downhearted because I shit myself. Damn nerve damage. I am glad I was home though. Crapping outside would have killed me.

I took a shower after I clean up the bathroom and my pants. It felt good to shower. My stomach still isn’t settled and my arse is sore. I hope the Imodium kicks in soon. I feel so humiliated. My ankle is hurting a lot because I keep having to go up and down the stairs. I know tomorrow is going to be a rest day for sure. I won’t be taking senna tonight, that is for sure. I still need to brush my teeth but I am feeling nauseous. Maybe I will later when my stomach settles down a bit.

My mother told me she is going to my Aunt’s because it’s my cousin’s birthday. I am on my own for supper. I might order pizza. I wanted to have Thai food from Boston but I forgot to order it before leaving the hospital. I just had eyes set on going home. I am really tired and my ankle is really hurting. I might have to take a strong pain pill tonight. I was going to take one this afternoon but I don’t want to be drugged going up and down stairs with my bowels being unpredictable. It’s weird I haven’t eaten anything all day and I am not hungry. Maybe I am getting sick of some kind. I just know the bowel incidents have left me feeling weak. I think I will take a nap and then order food.

snow came early so no cereal

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders

Snow came early so no cereal

The weatherman said that we were supposed to get snow tonight and it came around noon. Fuck. I should have left my house and went to the store to get my Cocoa Pebbles when I had the chance. I was up early this morning, around 0630 and fell back to sleep around 0900. It was sunny then.

My psychiatrist called me back late last night. She apologized as she meant to call me but there was no private space she could talk as she was in the ED all day. She doesn’t want me to feel discouraged about not finding a therapist and that she will find one for me. She also said not to give up. Sorry but I feel that way as I have no fucking luck with therapists. She also reschedule my appointment for today. I will see her on Monday. I had a feeling she was going to reschedule the appt.

When I got up, I had a ton of messages. Today is Transvisibility day so I came out on Facebook and Twitter. I wish I could come out to my mother so I can start my transition but I am too afraid of rejection by her that it might bring me to suicidal crisis. I got a ton of support from my Facebook friends. I haven’t had too many responses on Twitter, which isn’t unusual.

For those that know about Project Semicolon, the founder, Amy Bleuel, ended up dying by suicide last week. It has affected the entire suicide prevention community, including me. I wrote somethings on Twitter about how it affected me. I just wonder if the same fate is in my future. I have been suicidal a ton of times but luckily, I have not tried to attempt. I might have planned my death more than a few times but it gives me comfort more than a way out, so to speak. I told readers this and that if they didn’t know it, they should, especially if they were in the suicide prevention field. I usually don’t give out numbers because my blog is read internationally, but if you are in the US and have thoughts of suicide, you can talk to someone confidentially at 1-800-273-8255 or text the word “help” to 741741. I have used the Crisis text line more than once and find it helpful, once you get someone. Sometimes depending on the time of day, it’s difficult to reach someone but don’t give up. They usually get back to you, eventually.

I hate that I have to wait till Monday to talk to my psychiatrist because I am having trouble with my bladder. Since I have been using my strong pain meds more frequently, I have trouble urinating where starting is not so easy. It take a long while for me to know when I need to pee thanks to my nerve injury but the retention also makes me leak more which I don’t know about until I get the signal to pee and am in the bathroom. It upsets me because I will be wet and not feel it. I then have to shower or change my underwear because I don’t want to smell of urine. It’s just troubling me because it’s been going on all week and it’s been a few days since I last took a dose of strong pain meds. It could be the trilafon causing this as well as I have been on it for so long now. I’d just feel better if I had some input about it. My stream is okay and I am feeling like I do empty my bladder so I am not worried that I need to see a urologist but I might have to, which will suck. I know he will just tell me I have neurogenic bladder and to just deal with it. Not exactly reassuring.

Painsomnia is real

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders

Painsomnia is real

I did way too much today, though, to an average person, it wasn’t really a lot. Just what a “normal” person would do in a given day. I am not a “normal” person anymore. So now I am in a lot of pain. I have taken my pain meds but I don’t know if I will need my strong pain pill to take care of the intense throbbing in my foot. It’s more annoying than painful at this point. But it’s keeping me up despite how exhausted I feel.

The cake I made came out good, though there were parts of it where it didn’t cook right. This is my third time making the cake and I don’t know what I did wrong. I might have over beaten the batter, but other than that, I have no clue. It’s still good though and I will be sharing it with my psychiatrist.

I sent an email to my psych today about not being able to find a therapist. I told her I give up as this was my fourth try. She wants me to call her tomorrow. So I told her I would when I got up, whatever time that maybe. She said to call her during the day so we’ll see. I feel like I am in trouble but I know that I’m not. I don’t know why I feel this way. If she was concerned, she would have called me right away. I hope it’s to tell me she has a therapist or maybe to try calling one more time to someone she knows.

I was able to shower today despite my ankle going berserk on me. I felt much better afterwards. I leaked so I had to shower. I hate it when I leak. I don’t understand it though because I am having a hard time letting go of my urine. It’s taking me a while for it to pass when I am on the toilet. Stupid retention. I hope I don’t have to see a urologist about this. I really don’t want to go for testing just for them to tell me what I already know. My pain meds mixed with my antipsychotic are making me retain more. Fucking sucks. I wish I didn’t have a nerve injury. Then I wouldn’t be having this problem.

I had to wait until my mother went to bed to try and sleep but I kind of got my second wind when I went downstairs to see if she put my cake in the cake thingy that she has. I also wanted to bring up the clothes she washed so she didn’t have to. She started washing clothes around 2000. Pissed me off because the noise annoyed me. I don’t know why she didn’t do it earlier. It’s not like she did anything. Just don’t understand it. She could have waited till tomorrow.

I’m not planning on going out tomorrow. I need to rest because I need to go out on Friday to see my psych. That is kind of a hike for me and takes some energy. It’s not a huge deal but I am always tired after the visits. Maybe I will get some Thai food after my appointment. I haven’t had Thai in so long. It’s one of my favorite foods. Shoot, I still need to get hamburgers. I bought rolls but I still haven’t gone to the butcher’s shop for the meat. I will do that tomorrow. Then I can have burgers for dinner, with my honey Dijon mustard. Yum!